Imagine Wrigley Field packed to capacity, not one empty seat. Now, instead of the bleachers full of sunburned people swilling Old Style, put a baby in every seat instead. A baseball park full of babies – that’s how many infants are born every year in the United States with a Congenital Heart Defect (CHD).
Today kicks off Congenital Heart Defect week (which culminates on Valentine’s Day, natch) so let’s dig in. CHD affects around 40,000 babies a year and what’s scary (seriously, hold on to the rails) is that number is increasing steadily and no one knows why. We’re not talking about arms or toes, or some organ you could live without. This is not a story about babies born with wonky eyelashes, although, someone should get right on that because it sounds like hell. We’re talking about that organ in your chest, the function of which is the very cornerstone of human life. An increasing number of babies are being born with defects of this organ, including my baby, every year.
Some CHDs are mild, as is the case with us. Our troubles are the leaky valve/ventricle-hole/enlarged-chamber-but-otherwise-healthy variety. Our routine includes looking for blue lips and making sure she doesn’t sweat when she eats. We enjoy her tendency to sleep more, as heart babies do. We see her cardiologist four times a year. We will see him more if there are problems, less if she improves. We are lucky.
All mothers will tell you they are lucky, but when I see my Facebook feed full of friends (so many new friends! a next-door-neighbor, even!) full of babies spending weeks and months in the hospital, you can’t help but cry for them and breathe the smallest sigh of inner relief that it isn’t you. Not your baby now, maybe never. Maybe later. CHDs are tricky. Some require a trifecta of surgeries, no question. That involves lowering your baby’s body temperature to a frigid degree and connecting arteries and creating shunts. In medical terms they say, “atrial septectomy and transection and ligation of the distal main pulmonary artery”. In English, they say patch and reroute to make up for the missing half of a child’s heart. Other defects lay dormant until further notice. Things could be fine for 30 years, maybe sixteen, maybe five. You never know when the milder of the defects will rear up and you too, will be the one handing your baby over to get a chest scar – a badge of courage if there ever was one.
When something is wrong with your child, there are no other problems. There are only annoyances – like when CHD patients’ pictures are routinely stolen from Facebook and co-opted for profit by surly page owners.
There are good things too, if you can imagine. When you need a dose of hope, you can see your best-case-scenario in Shaun White. He was born with a CHD that required two open heart surgeries when he was an infant. Not only did he survive, but he went on to become a two-time gold medal Olympic athlete, not to mention a smokin’ matchstick.
The good, the bad, the tragic, the terrible, it’s all worth it for the love of a heart warrior. Sometimes that love is short. 100,000 babies die world wide from CHD every year. What can you do to help? Head over to the Children’s Heart Foundation and show some love.
And now for the video debut of the super stars!
I just. I . . . I JUST HAVE SOMETHING IN MY EYE!
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Filed under: CHD mama